Learning to live with ovarian cancer A Wyndmoor woman shares her story of treatment and survival

In April of 2010, Wyndmoor resident Betsy Wallace had a lot on her mind. Her mother, then 85, had a fall, and cat scans at the ER had revealed some bad news. She had been diagnosed with colon cancer and ocular melanoma. The scan found that it had metastasized to her liver and spine.

“So I was busy with all that, you know trying to get my hands around the fact that nothing could be done for her, so we were thinking about hospice,” Wallace said.

So Wallace, who was an attorney working for the 3rd Circuit Court of Appeals in Center City, didn’t think much of persistent pain in her back and groin. First, she barely had the time to think about it and when she did, at 58, she thought it was just part of getting old.

“I thought it was typical aging stuff,” she said. “I also noticed that I had really profound fatigue. I thought I was working too hard.”

After one particular pilates class, Wallace decided to see a chiropractor about the pain. He eventually helped her back pain, but had not been successful relieving the pain to her groin area. By this time she was taking ibuprofen constantly. It was time to see a doctor.

“I went and saw my gynecologist,” she said. “ I tend to be the kind of person who does research and self-diagnose. I went in thinking that I had something else. I never thought cancer. No one in my family had a history of cancer (prior to her mother’s diagnosis). It wasn’t on the radar for me.”

Her gynecologist ordered a trans-vaginal ultrasound. She called a couple days later and told Wallace that she had a tumor on her right ovary that needed to be removed.

“I asked if it was cancer and she said it was very likely,” Wallace said.“I felt like a jack-lit deer,” she said of getting the diagnosis. “I had been the advocate for my mother. I was able to converse and think of things to say. When it was me, I drew a total blank. By the time I got to the doctor, I couldn’t remember what they said. I was scared. I wasn’t processing anything.”

Wallace had a friend and neighbor who had ovarian cancer. Her friend was one of 7 people Wallace would eventually meet in the Northwest Philadelphia and Springfield area who had ovarian cancer. To understand how deadly it is, Wallace noted that four of those people had died since her diagnosis in 2010.

At the advice of her friend, Wallace made an appointment with a gynecological oncologist at Penn who found through tests that Wallace did indeed have an advanced form of clear cell ovarian cancer.

As all of this was happening in the summer of 2010, many of Wallace’s siblings were staying in the home she shares with husband Ken Weiner. The family was helping with and visiting their mother and helping with arrangements.

“Ken and I had this house full of relatives, so all this news was unfolding while they were here,” Wallace said.

Her sister helped her recover after a successful surgery to remove the tumor and after chemotherapy treatments. However, not long after those treatments, a persistent cough that worried her husband was tested and turned out to be a metastasis to Wallace’s lungs.

She entered chemotherapy treatment, and Wallace said she has now been without a recurrence in more than a year, a feat that has even surprised her doctors.

According to the Sandy Rollman Foundation, a non-profit dedicated to raising awareness and funds for research into ovarian cancer, the disease is the 5th leading cause of death among women. The foundation estimated that this year, 22, 288 women will be diagnosed with ovarian cancer and 15,500 will die from it. The foundation also claims that half of all women diagnosed with ovarian cancer will die within the first five years.

Wallace said she became aware of these statistics while she was recovering from chemo treatments. She learned also that the sort of cancer she had – clear cell – was particularly deadly, giving her little more than an 18 percent chance of surviving five years.

“Those are just statistics,” she said. “I had never thought I would have a year plus without recurrence.”

Wallace said there’s no way to be sure if it’s the reason she’s been without a recurrence for so long, but she said she did make a choice to be aggressive with treatments, and currently takes what is called maintenance chemo. It’s a tough process that robs her of strength and appetite once a month.

“For the first 10 days after treatment, I can’t exercise,” she said. “My sense of taste is totally off. I tend to not eat as much. Everything tastes like chalk. That resolves itself in 10 days. I lose alot of fluid, but I gain that back. Something about it makes you have a low energy mood. The steroids I have to take before make me irritable.”

She’s considering taking herself off of the maintenance chemo to give her body a break. She understands, though, that a break from chemo could very well lead to a recurrence.
The biggest part of recovery for Wallace, though, she said, was emotional.

After a period where she says she wasn’t dealing at all with her diagnosis, she was entered into a clinical study in which she received private counseling, which she said helped her tremendously.

After that she began mindfulness meditation and had a breakthrough moment at a day retreat.

“At first, I really felt that I was fighting something. I was fending something off. It was this big thing that I just couldn’t deal with and I felt very separated from myself,” Wallace said. “During the retreat I decided I could embrace it. I found a tremendous burst of energy by embracing it and realizing it was a part of me and I had to deal with it. So I’ve been aggressive with treatment, I exercise every chance I get and I’ve completely changed my diet.”

The diagnosis has also changed her as a person.

“It’s a life changer.” she said. “My focus has changed; my priorities have changed. But I’m still as goofy as ever. We both retired last July. I’m doing a lot of things I like.”
In addition to working as a counselor and with the Sandy Rollman Foundation in a program called “Survivors Teaching Students” that pairs cancer survivors with third year medical students, she’s also working on starting a local time bank in which members can swap services.

Wallace also is convinced that more needs to be done to educate and to support women with ovarian cancer.

“Women need to press for research into early detection of ovarian cancer and to be sure that early detection is covered,” she said. “Better screening would be helpful for so many reasons.

“It would be great if there were more counseling available,” she said. “Support for ovarian cancer patients is very little and part of that, I think, is because the survival rate is so bad.”

What Wallace hopes women will understand from her story, is that any hint of cancer should be investigated.

“The most important thing is for women to have a list symptoms,” she said. “Any one of those symptoms, if it’s persistent for 12 days, then they should really rule out ovarian cancer.”

The teal ribbon on the front-page banner indicates that September is Ovarian Cancer Awareness Month. Each week the Local will explore Ovarian cancer through interviews with survivors and health care professionals.

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I am very familiar with ocular (uveal or choroidal)melanoma due to a close friend who recently passed away. Half of the people diagnosed with ocular melanoma will develop metastases, yet it is not true that “nothing” can be done.
There are excelent centers offering viable treatments in several East Coast Universities such as Thomas Jefferson in Philadelphis, Dana Farber in Boston and Sloane-Kettering. MD Anderson in Texan. The Angeles Clinic in West Los Angeles/Santa Monica area. There is help and there is much ignorance in the medical community.
The are numerous online resources, as well.

http://www.facebook.com/mdesannoy Margot Desannoy

Betsy is my amazing sister and she has taught me, through her journey through cancer diagnosis and treatment, that all any of us has in life is this exact moment to be lived as fully as we can. She has a wonderful zest for life and, as she said, she remains as goofy as ever, in such a good way! Her husband, Ken, is a wonderful, loving and pun-master support. Laughter therapy is the best.

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